1. Provide
coverage 24x7; do not leave the
person alone, even (especially)
at night.
The hospital routine runs 24x7,
and as anyone who has ever been
hospitalized knows--does not
respect sleep or night time
hours. Ask for the rules for
overnight visitors and if
needed, have the doctor write an
order that allows you to have
someone with the patient at all
times. Some families hire
a caregiver to cover the night
shift for them; others rotate
the responsibility among
siblings or a few close friends.
I planned coverage for the
early evening so that I could go
home to eat dinner, nap and
shower; then I was prepared to
sleep in the hospital room right
next to his bed. Remember
the patient is already in a
world he or she cannot manage;
now he or she is in an alien
environment with strangely
garbed creatures who glide in
and out of the room at all
hours.

2. The person with
Alzheimer’s Disease or related
dementia needs an advocate at
all times.
Every common hospital routine
such as drawing blood, hooking
up an IV, going to the bathroom,
or being transferred to go for
an X-ray is bewildering to the
person with dementia and may
result in anxiety driven
behavior. Pulling out the
IV, getting out of bed with a
catheter inserted, or refusal to
cooperate with treatment may
result. Toileting is a
challenge in the hospital as
there may be a catheter or an IV
that involves special care.
A person with Alzheimer’s is not
going to remember that he or she
needs help to get out of bed. This can result in falls, torn
IVs, and urinary tract
infections. During one
hospitalization, a technician
insisted on doing a test that I
had not discussed with my
husband’s doctors. Only my
staunch refusal persuaded the
person to leave. As it
turned out, she was in the wrong
room. Incidents like these
may happen during a hospital
stay. An advocate who is able to
talk with staff and solve
problems should be ever-present.
If you are fortunate enough to
have others helping you as a
patient advocate, be sure to
leave the records and doctors’
names with them.

3. Do not assume that the
staff understands the realities
of caring for someone with
dementia, much less the
specifics of your loved one.
The call button, the device that
alerts the staff to come to the
room, is useless to a person
with dementia. A nurse
carefully explained to my
husband how to use the call
button if he needed anything. He
smiled his charming smile and
nodded, but did not understand.
When I used the button to ask
for help to take him to the
bathroom, a disembodied voice
came from the headboard asking
what he needed. I realized
then that he would not be able
to connect the need for help
with the voice, much less
articulate that he had to go to
the bathroom. Learning to use a
call button is typically
beyond the learning of anyone
with dementia, except in the
earliest stage.
An
advocate has to be there to
interpret your loved one’s needs
and to actively get help.